Interactive workshop: Gender Differences in autism

Research Autism Conference

25th November 2015 Dr Jacqui Ashton Smith. Executive Director of Education. National Autistic Society

• “Being an autistic woman has been pivotal to everything that’s

happened to me. If I’d been an autistic man, my story could have

been very different.” (Postgate)

Gender differences in autism

• The question of whether slightly different behavioural criteria for autism for males and females are needed is challenging.

• However, careful reflection helps to resolve whether the diagnostic criteria for autism are male biased,

• and how the field can move forward with greater consensus on what defines autism.

(Meng-Chuan Lai, 2015)

Are there symptomatic differences between young autistic girls and boys?

• According to the ASSQ-REV, 45-item extended version of the ASSQ there are some

(Gillberg and Kopp 2010) • Different voice or speech (50% girls, 20% boys) • Motor tics (40% girls vs 15% of boys) • Deviant style of gaze (50% girls vs 30% of boys) • Lacks best friend (30% girls vs 70% of boys) • Difficulty completing activities (30% girls vs 5% of boys) • Follows other children like a shadow (40% girls vs 10% of boys) • Demand avoidance (65% girls vs 20% of boys)

Anecdotal Descriptions About Behavioural Sex/Gender Differences in Autism. Domain Characteristics More Often Present in Females Than in Males

(Gould & Ashton Smith 2011, Kopp & Gillberg, C 2011 & Attwood, 2007)

• Social interaction Greater awareness of the need for social interaction

Desire to interact with others Passivity (a “loner”), often perceived as “just being shy” Tendency to imitate others (copy, mimic, or mask) social interactions, which may be exhausting Tendency to “camouflage” difficulties by masking and/ or developing compensatory strategies One or few close friendships Tendency to be “mothered” in a peer group in primary school but often bullied in secondary school

Anecdotal Descriptions About Behavioural Sex/Gender Differences in autism

• Communication Better linguistic abilities developmentally Better imagination (fantasizes and escapes into fiction and pretend play, but is prone to being nonreciprocal, scripted, and overly controlled) • Restricted, repetitive patterns of behaviour, interests, or activities Restricted interests tend to involve people/animals rather than objects/things (e.g., animals, soapoperas, celebrities, pop music, fashion, horses, pets, and literature), which may be less recognized as related to autism

• Other Tendency To be perfectionistic Very determined Tendency to be controlling (in play with peers) High (passive) demand avoidance Tendency to have episodes of eating problems

One study to stimulate ideas and debate…

Sex/Gender Differences and Autism: Setting the Scene for Future Research Meng-Chuan Lai, MD, PhD, Michael V. Lombardo, PhD, Bonnie Auyeung, PhD,

Bhismadev Chakrabarti, PhD, Simon Baron-Cohen, PhD

WHO definition:

‘Sex’ refers to ‘biological and physiological characteristics that define men and women’

‘Gender’ refers to ‘socially constructed roles, behaviours, activities and attributes that a given society considers appropriate for men and women.’

FAQ The question - “Do females with autism have different behavioural

characteristics from males with autism?”

is different from “Why are there more males diagnosed with autism?”

or different from “Why are males more susceptible to developing autism?”

These questions may be interlinked but require different methodologies to address them.

Although it is often stimulating to discuss findings from 1 question to address others (e.g., from finding a behavioral difference between males and females with autism, “jumping” to implications for sex/gender-differential liability and etiology), it can be conceptually challenging

JOURNAL OF THE AMERICAN ACADEMY OF CHILD & ADOLESCENT PSYCHIATRY 12 www.jaacap.org VOLUME 54 NUMBER 1 JANUARY 2015

How should autism be defined and diagnosed in males & females?

Issues around diagnosis……. Age of diagnosis is, on average, later in females than males. (Begeer,S. et al) Given similar levels of autistic features, males are more easily diagnosed with autism than females. (Russel, G. et al) Different subgroups in females: those individuals with a more “classical” (male-typical) presentation and/or cognitive delay may be readily diagnosed at an early age, but those who have atypical, compensated, or masked characteristics might be under- or misrecognized until later in adolescence or adulthood. (Meng-Chuan La.i et al) Another view is that it is not females who are prone to be clinically late-diagnosed or under recognized, but rather their need for a clinical diagnosis is less than males, or that the need arises at a later developmental stage (e.g., in adolescence) compared to males.

How should autism be defined and diagnosed in males & females?

• How autism is defined and identified substantially affects all aspects of our understanding of autism.

• Better understanding of both males and females is therefore critical for male-predominant conditions such as autism.

• ‘Longstanding underrepresentation of females in research may have generated a male-based understanding of autism’

Diagnosis?

Prevalence • The 4–5:1 male bias may be partly due to the under recognition of females

(particularly higher-functioning), ascertainment bias, and issues of diagnostic instruments. . (Meng-Chuan Lai et al)

• Even studies that better account for these issues still show a 2–5:1 male predominance, which has important etiological and developmental implications.

• Review of the diagnostic criteria?

• Developing instruments sensitive to females to assist identification

* Exploring how co-occurring conditions or cognitive/temperamental

features influence the presentation and identification of autism.

* Qualitative work to identify mechanisms and consequences of

“camouflage” (i.e., masking and/or compensation) and Developing

quantitative measures for camouflage

Prevalence?

What are the similarities & differences between autistic males &

females? • Differences and similarities

• Gender stereotypes

• Gender identity and autism

• Gender expectations?

• Developmentally, gender may influence how individuals maintain or modify their autism-related characteristics by intrapersonal, family, and social processes. (Kreiser, N.L & White, S.W 2014)

Gender differences?

• “ I was an avid observer. I was enthralled at the nuances of people’s actions. In fact, I often found it desirable to become the other person…..At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating.”

(Liane Holliday-Willey: Pretending to be normal.)

Gender similarities and differences?

Gender expectations?

• At school I was bright, but eccentric. If I had been a boy, that would have been tolerated more. I’d have gone into science, I’m sure – I might have gone on to be a nuclear physicist.” (Orr, 2008)

• “Men and women are judged differently when it comes to appearance….Men who appear grungy, archaic in their fashion sense, or just eccentric are usually excused for this shortcoming…. But a grungy, unkempt, or strange-looking woman is a spectacle.”

• Women on the spectrum who do not conform are viewed as “ …childish, disorderly, or rebellious and not accorded respect or taken seriously.” (Grandin, 2005)

Equipping girls with the knowledge and confidence to enable her to choose the right path for her

Understanding that it is ok if girls do / or do not want to be part of the ‘typical’ culture and its requirements.

• “There are rules about what women need in the way of relationships that are pretty clearly communicated in our culture”…”these rules should not be applied willy-nilly to girls with AS.”

• “Girls with AS, even more so than boys with AS, are often bombarded with variations on the idea that being more social and being a better person are the same.”

• Finding people with shared interests is more important “…data shows us that people who have much in common are most likely to get along.” (Attwood, 2007)

• “You don’t find true love by being a fake; you find him by living and being the best version of you that you can achieve.”

• “Romantic love is not necessary to human happiness so it is ok not to feel it”

(McIlwee Myers, J. in Attwood, 2007)

Gender expectations?

• Examples?

Gender differences - Employment

“I am what I do, rather than what I feel.”

“ I can learn social skills, and learning social skills is very important, but I cannot learn emotional relatedness.”

– “They (parents & professionals) need to understand that having meaningful work is what gives life meaning.”

(Grandin in Attwood, 2007)

Are schools successful in preparing our female students for meaningful careers?

Males with ‘disabilities’ are more likely to have employment post school than females.

Women in employment were working in unskilled jobs. (Rousso & Wehmeyer, 2002)

Examples - Current topics of debate

Sex &

Relationships

Gender

Identity

Gender

dysphoria

Employment

Mental health

& well being

Cyber bullying & keeping safe

Acknowledgements

Sex/Gender Differences and Autism: Setting the Scene for Future Research Meng-Chuan Lai, MD, PhD, Michael V. Lombardo, PhD, Bonnie Auyeung, PhD, Bhismadev Chakrabarti, PhD, Simon Baron-Cohen, PhD Journal of the American Academy of Child and Adolescent Psychiatry. Volume 52 Number 1 January 2015 All quotations cited in this presentation